Quintooples are giving away a water bottle...I love give aways

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http://www.quintooples.com/

need to vent :)

I had a drs appt today for myself...I have fibro and arthritis but lately have been having a lot of back problems. He prescribed a muscle relaxant but said nothing is going to help without PT. I used to go to PT at aquacare for the pool...did it 2 -3 times a week for 3 years in the pool...it made the biggest difference in my pain level...but I haven't been in a year, since taylor was born...I don't see how I can go with her, she is too busy and needs to be entertained...I can go when the nurse is here with Hannah but need to find someone to go with me to play with taylor or to watch her here...please pray that I can find someone..it's really frustrating.
I need to get a large gate to keep taylor out of the kitchen but can't even find time for that now..I did stop at walmart on the way home but they didn't have any wide ones, just for a standard door...if I go anywhere tomorrow, I have to take both girls...I could meet my mom but she can't really help me getting them in the car, she can just open the back end and push taylor...so it's a lot of lifting :( I need to get groceries too but the nurse doesn't come in til 10pm 2 nights...this is getting really old...
soory, guess I just needed to have a pity party :)

back from FL and Hannah's week

I had a great time in FL...I didn't do anything! I tried to sleep late, took a couple naps, read, played on the computer...mom was with me and we didn't keep a car except for Thurs...my sister pam was taking us out shopping and to dinner after work and thurs we went to the movies to see "the proposal" It was hilarious...the last movie I saw in a theater was the little mermaid, when becky and jenn were little (they are 26 & 28 now) I went for a walk on the beach with blue pam on monday and we looked for sea turtles. We saw lots of nests and a couple egg shells from where predators had attacked the nests...that was sad. I thought is was interesting to learn about them...I brought taylor back a shirt with a pic of the turtles and the shells. There were some nests that should be hatching soon. The lady there told me that we should have a lot of them here in MD...we don't get to go to the beach very often but next time I will look for them...I didn't go out in the sun, I am too "white" for the FL sun...we did go to the pool a couple times, in the late evening or early morning.
The whole point was for me to relax and pam and blue pam made sure that I did. blue pam gave up her bed for me. I did miss my family and it felt good to be home..can't be in 2 places at once :(
Hannah still seems to be fighting something, her secretions are still thick and a lot of them. Her temp goes up and down...I got home late friday night and sat I could tell that I was picking her up again...my back started aching again and all the old aches and pains came right back. I have fibromyalgia and some arthritis so having to deal with hannah and taylor takes a lot out of me.
Hannah's seizures are about the same. She hasn't been sleeping hardly at all the last 2 days but it looks like she is finally asleep now, at 5:30 in the afternoon :)
I am really frustrated about her dental...medical assistance changed their program for dental and now we can't take her to dupont where we do all of her other drs and services. I have called them and MA but no one can tell me anything. If we go out of pocket, it's $230! We can't afford that. I can't imagine taking her to a local dentist with all of her dental problems...she has a partially repaired cleft lip and palate and teeth coming in the wrong places. If she needs any kind of dental surgery and we go locally, I don't know how that would get done. Now, even her plastic surgeon is connected to dupont...please pray for that.
Taylor has decided today that walking just might be easier than crawling...she has been walking a lot more today. She will be 1yo on sept 1. She was born on labor day last year!
Gotta go, we have our LIFE cell group meeting here tonight...

Hannah update and me going to FL!!!

Hannah has been doing pretty good lately except for her seizures…for the last couple days she has been coughing a lot more than usual though…I just checked and her temp is 99, and her secretions are a little thicker…normally I wouldn't be worried but I am leaving in the morning to fly to FL to take my mom to visit my sister….hannah's nurse is going to be here with her during the day, thank you patti! So, please pray that she isn't getting sick right now and for us to not worry :) I know she is in good hands but you know how that mommy feeling is…chuck will be alone with her a lot tomorrow (Sunday) afternoon and he doesn't take care of her very often without me. I will be home late Friday night.
A new concern is dental…MD medical assistance has changed their dental program and it looks like dupont is not accepting it now. I think it's important for her to have her dental work done there since that is where all her other drs are and if they need to pull teeth they can do it there. She has an appt on the 19th so pray that we can find a way to have her appt there.
Our nursing is better right now but our newest nurse is working the extra hours that we have and I am not sure she wants to do all of that permanently so please pray they can find a permanent replacement…thanks

Hannah is now 14 years old!

Hannah is now 14 years old...she has more than passed her life expectancy that was given when she was born...the Lord is the one who has gotten her where she is now..hard to believe my baby is 14yo but she is still my easiest teen! Our friend Peggy painted her room for her birthday..its a really nice bright green color..we also put a new front door on the house on her bd...we were able to take down the storm door so now we only have 1 door with her wheelchair so that makes it better for her and for me!
Chuck and I finally got a chance to get away overnight this past weekend...it was nice to get out of our normal routine even though it really wasn't long enough :)
We stopped the new seizure med, I didn't like the way it made hannah with the side effects...she was hyper all the time, constantly moving and not sleeping during the day...that is still not back to normal but she just had her last dose saturday night. Her seizures are about the same...this week we do have nursing coverage every night, Praise the Lord \o/ we do have a new nurse for friday nights..she seems to fit in well...
looks like we may have to find another nurse, Alice got hurt at another case and is in a lot of pain...she has too see her dr tomorrow and we think he is going to put her on disability. For the next 2 weeks she is only here 1 day but starting Aug 1 she is supposed to do 3 days a week here...so pray that they will be able to find a replacement if that happens. One of our old nurses would like to come back but she is the primary nurse on another case so the timing is not good.
I read on another blog about getting paid to advertise on blogs for different products, I laughed when I read hers about medical things (thanks Holly :)I could have made a fortune in the last 14 years with all the different things we have tried and used for Hannah LOL
Taylor is 10 months old now...she has been taking a few steps and can stand alone for a few minutes but when she realizes it she sits down :) It's getting hard to feed her, she breaks out when she eats any fruit but bananas and gets sick with milk products...the funny thing is her mommy never liked bananas even as a baby and still doesn't and they are taylor's favorite :) her favorite toy is her walk behind/ride on car...she pushes it sideways everywhere! she looks like a little old lady pushing her walker. I keep trying to get new pics of her but she is either moving too much or grabs for the camera. I will try to get some new pics up soon.
I realize how blessed I am...thanks for praying for us....

Hannah update

This is one of those times that I really don't know what to say in an update...
We did see the nurse practioner when we got to neuro and I asked her why we never see the dr, she said it's just the "luck of the draw" So I asked to see him, she said we would have to wait a long time and I told her I would wait...I didn't think it would take long since we were taking up a room and I had my mom, taylor and my nephew josh (4yo) with us :) she had already told us about a new med that had just come out called banzal. We started that last night. she also said that they last time we were there and went for bloodwork they didn't do all the levels...I felt rude almost saying that I didn't order the bloodwork or draw it, don't know why she was acting like it was my fault, I had it done there right after her appt last time :( we did bloodwork tues again...
The dr acted a little annoyed when he came in, but as we talked I think he understood whey I wanted to talk to him.
I told him that we had seen a lot of regression with her in the last year or so...she rarely laughs and smiles anymore and just doesn't seem as content as she used to be. She just looks tired all the time and either sleeps a lot or just sits there in a "daze". She is having more seizures and different kinds, she has to be cathed for urine retention, etc. He said that is a progression of her syndrome, kinda like alzheimers would do to a person. I asked him why no one had ever told us that before and he said that most parents don't ask or don't want to know. I think I always knew that in the back of my mind :( and I am very realistic with things pertaining to Hannah...
I had thought I was imagining things so it was a relief to talk to him about it...
We have always tried to make sure Hannah was comfortable and don't want her to suffer a lot...please pray for guidance and comfort for us and especially for her...only the Lord knows what is going on with her....and He is in control \o/
Chuck and I talked about this later and he said he thinks that's why he kinda pulls away with things pertaining to her...and I can be a little obsessive, so pray for us to find a balance. I feel like I am alone most of the time with making decisions and anything with to do with taking care of hannah.
I am getting burned out again...haven't had anytime away for over a year...except in the fall chuck and I went to see jenn and bob in VA but were only gone for 1 1/2 days...it's harder to get away now that I have taylor too...my dr wants me to go back to aqua therapy for my arthritis and fibromyalgia but I need someone who could watch taylor for me thos couple hours a few days a week :) I am so blessed to be able to take care of taylor but she does wear this old grami out :) she is such a blessing and a sweetheart and so much like her aunt jenn when she was a baby :)
Our nursing is changing, Alice has moved but still working here for now and Patti is moving...pray that we can work out the hours with the other nurses for good coverage and hours to satisfy everyone :)
Thank you for the continued prayers for us...

Serious Life Magazine

I wanted you to know about this publication I’m a part of called Serious.Life Magazine. They just published a new issue today, and I am in their Featured Blog Directory. It’s a very high quality magazine… you’ll really like it.

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